Civil Rights, Social Action, Advocacy

SOUTHERN ARIZONA NETWORK FOR DOWN SYNDROME

aka SANDS

Tucson, AZ

Mission

Our Mission
SANDS mission is the educate support, and advocate those is Southern Arizona affected by Down syndrome. SANDS pursues this goal by creating an open, supportive, and collaborative network connecting individuals and families with needed resources and information.

Ruling Year

2004

President

Allyson Schug

Main Address

PO Box 17011

Tucson, AZ 85731 USA

Keywords

Down syndrome

EIN

47-0932953

 Number

6113414120

Cause Area (NTEE Code)

Disabled Persons' Rights (R23)

Alliance/Advocacy Organizations (E01)

IRS Filing Requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Social Media

Blog

Programs + Results

What we aim to solve

Down syndrome is the least funded syndrome per capita nationally. Because of this, individuals with Down syndrome can fall through the cracks and not receive the help and services they need to be successful. Many times, insurance companies will not cover therapies or equipment that the individual needs. Additionally, government resources can be difficult to navigate and confusing for families. This often results in families having to carry immense financial and emotional burden when trying to provide resources for their loved one with Down syndrome.

Our programs

What are the organization's current programs, how do they measure success, and who do the programs serve?

SOURCE: Self-reported by organization

Give It Back

Where we work

Charting Impact

Five powerful questions that require reflection about what really matters - results.

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have they accomplished so far and what's next?

We are dedicated to being the primary source of information and support for individuals with Down syndrome in southern Arizona, working towards an improved quality of life and respect as valued members of society. We focus our efforts on connecting individuals and their families with needed services and resources, advocating locally and nationally, and raising public awareness. We primarily work with families to help them achieve their goals. From prenatal diagnosis, to end of life care, we are there to help.

SANDS has several programs in place to assist our families. We provide new and expectant parent packets to help get them connected to services right away since early intervention is key to childhood development. We are connected with Down syndrome organizations on a national level to advocate for our community, as well as allow families to participate in the process as well. Our biggest program is our Give it Back individual Grant program. This program provides funding for individuals with Down syndrome to provide resources that their insurance does not cover, and is too costly out of pocket. We help pay for assistive communication devices for those who are non-verbal. We help pay for therapies and their equipment, educational materials and programming, specialty eyeglasses, specialty car seats, medical equipment, and more. Most of these items are very costly, but can provide many benefits to these individuals to help them stay on track as much as possible. We also host an annual Buddy Walk, it is our biggest fundraiser, but it is also a large resource fair for our families. This provides an opportunity for our families to connect with local services all in one place to help meet the needs of their child. It also provides adults with Down syndrome the ability to network with other community programs and possible employers.

We actively pursue grants and fundraising opportunities to keep our programs funded. We also partner with other disability organizations and attend community events when possible to connect our family with resources and meet new families. We send new parent packets to hospitals and have established relationships with the facilities so that they can call us when a family needs assistance. We also connect with DDD and DES to let them know what services we can provide their clients.

We measure our progress by the following: 1. How many Give it Back individual grants we award. 2. How many people attend our Buddy Walk Event. 3. How many new parent packets we provide to the hospitals. 4. How many new parents connect with us.

Due to COVID -19 this year, our usual methods of measuring goals have slightly shifted. Since we are not able to visit hospitals and new parents, those units of measure have paused. However, we have currently expanded out individual grant program to provide even more funding, and have already provided a year's worth of grants in just 3 months. Also, our organization has been awarded more grants than ever before so we are able to start a new program to help provide individual tutoring services to our families that need extra educational support while their children are out of school.

External Reviews

Financials

SOUTHERN ARIZONA NETWORK FOR DOWN SYNDROME

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  • Address, phone, website and contact information
  • Forms 990 for 2018, 2017 and 2016
  • A Pro report is also available for this organization.

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Operations

The people, governance practices, and partners that make the organization tick.

Need more info?

FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2018, 2017 and 2016
  • A Pro report is also available for this organization.

See what's included

Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

BOARD ORIENTATION & EDUCATION

Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?

Not Applicable

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?

Not Applicable

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?

Not Applicable

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?

Not Applicable

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?

Not Applicable